Author: Juan

The Mayans were wrong and we’re all still here. We’re closing out 2012 with a big cheer! I’d like to take this chance to write some thoughts and give thanks to a year that has gone.

First thing’s first. Thank God for another year in this world. It’s been a tough year health wise. With ERT not being regular there was a decline that I felt. Still I’m glad it’s still going and I will try to make it up in 2013. I am still grateful for the treatments I’m getting. It helped me reach this far.

2012 was generally good. Scratch that. It was fantastic. The biggest blessing thus far is the addition of my first nephew Lucas. That alone made 2012 the best year ever. I look forward to seeing him grow up in the years to come.

Work has been good. I’m thankful and blessed to have gainful employment when some people do not. It allows me to do the things I need to do outside of work. I’m looking forward to another good year at work and hopefully grow further and improve along the way. I thank my co-workers and employers for allowing me to be a part of the organization.

I turned 35 this year, a significant milestone to say the least. I honestly thought I was going to celebrate the milestone with a big bang. As the date drew near, I realized that I already had what I really wanted, a happy family, friends that I can count on and the fact that I’m still here. I did not need a big celebration to remind me how lucky I am. I spent time with some of the people that really mattered to me. Those people that mattered but I didn’t see I take comfort in knowing that they still wish me well.

Oh, did I mention that I finally got a big boy bed? Yeah after all these years of sleeping in a bed that I’ve slept in since I was in high school, I finally bought myself a bed befitting my age. I guess that’s quite something.

One of the things I’m also most thankful for this year is the gift of friendship. Making new ones, strengthening old ones and reconnecting with people I have not seen or spoken to in years. Some friendships do stand the test of time. Even if you haven’t seen each other in years, you just pick up where you left off. Then there are also new friends whom you’ve just met but feels like you’ve known them for years already. They come in all shapes and sizes too!

It’s also been a good year for the Philippine Society for Orphan Disorders. We’ve helped several patients, moved to a new office, raise some money and awareness. It’s been one of the best years so far and we only want to go further. Children with rare diseases need help and we will keep on fighting for them.

I’m glad the world did not end. Looking back, despite all the challenges, I think I’m at the best place in my life that I’ve ever been. I can’t be thankful enough to God for the blessings. I know much needs to be done and I still want to fulfill other dreams. If the world did end, I know that I’d still be thankful. I’ve done a lot of things and met a lot of great people along the way. I don’t want it to end though because I know the best is yet to come.

As 2013 approaches, I wish for good health, better opportunities financially so I can pursue the other dreams I’ve longed for. That includes making my mark in this world.

From my family to yours, I wish you all a happy and prosperous new year. I thank you for being a part of 2012. May God guide you and keep you in the years to come.

I found myself thinking about Sec. Jesse a lot today. I didn’t expect that a death of someone that never even met in person, a politician at that would have this profound affect on me.

I was sitting with my dad when I found out that his plane had crashed. My dad was catching up with the news on his iPad. He let out a quiet “Oh no” and proceeded to tell us that the plane carrying the DILG Secretary had crashed 500 meters short of the Masbate airport.

I first heard of Sec. Jesse years ago. My dad was helping campaign for former Sen. Raul Roco during his bid for the Presidency. My dad told me about the Mayor of Naga who has done so much for the city. Naga is close to my dad’s heart because it is the city where he grew up. I’ve never been to Naga myself but I’ve often heard my dad and his siblings tell stories about their childhood.

I woke up to the sad news that Sec. Robredo’s body was found inside the plane. I’m deeply saddened about the demise of a man I have not met but only know through reputation. That does not diminish from the fact that the Philippines lost a great man. It’s also a sad coincidence that his body was found during the death anniversary of another great Filipino.

We will only truly lose Sec. Robredo if we do not take up his cause and follow his example. A true servant leader, he embodies what a great Filipino public servant should be.

Paraphrasing from Tony Meloto “When a hero falls from the sky, many others will learn to fly” A true Filipino hero fell from the sky. Let it be our duty to learn to fly and soar to the heights that Sec. Robredo dared to glide.

God speed Sec. Jesse. You will be missed not only by your family but by the entire Filipino nation. Take heart that a whole nation is in tears because of your early demise. It means you are loved and cherished. In the world of politics very few people have the same respect we have for you. Look after the nation from heaven. We will see you again some day. Dios Mabalos!

I wrote a blog post/article last July 14 titled “ThisAbility: 10 Life Lessons I Learned Growing Up With Pompe Disease”. I’ve been thinking about writing this for a long time. The main reason behind it was that I’ve learned a lot of lessons growing up battling a life threatening disease. Lessons that I know are applicable not just to someone going through an illness but also with everyday life.

I initially just wanted to post it on my blog. After receiving favorable feedback from friends and family I realized that I wanted to share it with more people.

A friend of mine is set to open up another restaurant by mid August. Umami Hambaagu House promises to server the best “melt in your mouth” Japanese Burger Steaks in town. If their previous restaurants are any indication this promises to be something worth trying.

For now the location is hush-hush. If you want to find out where it is, head on to their web site and sign up for their news letter. They will inform you of the location once it’s ready for the public.

Quoting from their web site:

Umami is a small, personal and cozy restaurant serving creative and authentic Japanese burger steaks in a secret location somewhere within Metro Manila. The only way to know our location is by joining our mailing list or following us on Facebook. If you desperately want to know, you can ask us but we’ll have to murder you in cold blood right after.

This November I’ll be 35 years old. That would be 5 years more than what I initially thought I’d live to. When I was 10 I started showing symptoms of what would be Pompe Disease. Of course at that time we didn’t know what it was called. It would take several doctors and 6 years to eventually find out what I was sick of.

I’m not here to talk about Pompe Disease specifically. If you want to know more about it you can head on here to read about it. Please finish this first though.

In my 35 years of living, 25 of which were spent battling a dreaded disease I learned a lot of things. Lessons that I know have made me a much better person. Lessons that I know will help other people as well. That is the main purpose why I wrote this article.

I’ve been a big fan of Terence Wrong’s medical documentaries ever since I saw the first episode of Boston Med that aired 2010. After seeing that show I googled for more information and saw that there were prior documentaries. So I ended up watching Hopkins 24/7 and Hopkins.

I was so glad to find out that a new documentary was set to air last July 10.

I caught the first episode just today and I must say, it looks to be another good series. I love that it’s set in New York. That city will always have a special place in my heart. I’ve been there several times and I spent some of my happiest days creating good memories there.

Well don’t take this literally. I’m using “Eat Steak Everyday” as an analogy to a common but important lesson that I was reminded of last week.

My family and I had gone out to Elbert’s Steakroom one of the best steak places in Manila. I’ve wanted to take my parents out to a nice dinner. My dad’s birthday was coming up, I had extra money saved up and it also happens I was given the night off from work. With everything falling into place we went out for a special dinner.

To make the long story short we had one of the best steaks I’ve tried. It was a great dinner with dad, mom and my brother. My sister-in-law couldn’t make it because she was on bed rest. That would have made it better.

There’s one thing I never joke about. I never joke about wanting any other parents other than the ones I have. My Dad and Mom are two of the best people I know. I believe that God puts people in your life for a reason. He knew that without my parents I can’t survive the challenges I’m going through.

I wrote about my mom last Mother’s Day so it’s Dad’s turn today.

It’s hard to put down into words how much I love and appreciate my dad. I don’t think I’m that good of a writer to do him justice. Since it’s Father’s Day though I thought I’d try at least.

No! This is not about Apple’s legendary founder. I’m writing about the only Steve I love more than Steve Jobs. Much more.

One of the reasons I made it this far in life was due to my brother Steve. I’m the eldest of what is technically four children. Two of my brother’s passed away. One died from a miscarriage and the other one died when he was two days old.

Steve is my only living brother. He was born four years younger than me. I’m supposed to be the elder brother but growing up it didn’t feel like it. Sure when we were kids I was the boss of him but that didn’t last long.

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About Fight Pompe

Welcome to my corner of the virtual world. I mainly put up this blog to chronicle my fight against Pompe Disease. A rare genetic disorder. Apart from that I wanted to write about things I've learned going through my experience, stuff I love which includes design and a bunch of other stuff. I hope you enjoy reading my entries. Check out my about page for more details.